Wednesday, July 30, 2008

Break Through

Quick update on our little patient: Looks like me might be discharged tomorrow!!  His vitals are beautiful; his incision is healing nicely.  A new little snag has surface.  Miles has developed a yeast infection at the site of his neck IV.  Though the IV has been out for a few days, this still raises some red flags.  We are using 2 different forms of antibiotics- one oral and one topical.  Infections and heart surgery are a dangerous pair- can't have anything nasty near the incision.  And since his little body is so small- that is not a far distance to travel.  If we do in fact leave tomorrow, we will be armed with meds and proper care information.  A plastic barrier of sorts will be stuck on his chest to keep the yeasties and spilled meals at bay.  Miles also smiled more today than I have ever seen.  He's on cloud nine and feeling fine!

As for the breaking through, that is my handiwork.  Yesterday was chock full of insight and personal growth.  I examined my fear- the fear that reached its apex on Friday.  Revelations revealed that my fear was motivated by guilt.  

When our child was diagnosed with Down Syndrome, the physician's first words were, "It's not your fault."  I think she knew to look at me when saying this.  Though we made eye contact, and I nodded my head to indicate comprehension, my ears and brain were not connected.  I heard this exact statement from three other doctors- must be in their code to comfort the parents, soften the blow, ease the adjustment.  Whatever, they are only words.  Well intentioned words, but words none the less.  Words which are not powerful enough to change our personal trajectory, our chosen path, the obstacles that lay before us.  Words that can't make my son healthier.  Words that did nothing to alleviate my guilt.  

It was not until yesterday that I could fully examine my self-generated burden, this weight of feeling responsible for my son's genetic disorder and his less than perfect heart.  Logical thinking has never been available to me in times of distress.  That nasty tide of self-loathing and blame-seeking washes in when there is ever a chance I might have screwed something up.  Yep, I have been battling perfectionism for years.  Nasty way to view one's self- as never good enough, always at fault, and being less than.  True to form, upon learning about my son's situation, my family's new path, the seeds for a melt down were planted.  Oddly enough, I have been so distracted over the past 2 months, I haven't had much time to dwell on my blame for more than minutes at a time.  But that negativity from those brief but recurring moments added up.  They congealed and formed a monster much larger than I have ever encountered.  

This beast, this black smog, this carnivorous entity that was slowly coating my thoughts, left me in a total state of funk.  Not the party funky, like disco, but a more snarky and agitated funk.  It was like I took all the fun out of funk.  Brittle to the world around, quick to draw my gun-everything I felt and thought was tainted.  Stained with a sense of failure.  In my heart and deep inside of my soul, I felt that I had failed Miles, that I failed at growing him healthily.  

I get genetics; I know how it works.  And on the rational level, I know that having a baby is always a game of cellular roulette.  I've done Punnet Squares- yes, a pink geranium is spawned from red and white geraniums.  But my baby is more complex than a flower; his genetic code stretches for miles and Miles.  I would answer on any standardized test which option A- that this is not my fault.  Give me an inkblot test, you would have gotten a different answer.

Now add in the fear of the surgery.  This proved to be a soul-splitting combination.  The guilt from being an inadequate mother X the terror of losing your child during a complex but necessary medical procedure= one of two things.  One, a chance to completely shut down and slide further down the rabbit hole.  Two, break through the wall, shed the chains, and accept life- simplicity and complexity in all.  Thank God and Monty Hall I chose door number two.  Life was getting unbearable.  I feel a billion pounds lighter today; my shoulders a lacking the weight of the world.  My sunset moment from last night was a direct product from my transformation.  A transformation born from the most intense meditation session I've ever had.  A meditation session I was ready for, and a transformation I was ready to accept.  

So, will I be sunshine and roses from here on out?  Not even close.  I am still me, a foolish dreamer prone to nightmares and unnecessary bouts of negative fantasies.  My mind will always gravitate toward the pessimistic side of the street.  But I will chalk that up to my strong streak of realism.  Guess I shouldn't have read "A Clockwork Orange" when I was twelve. . .But no regrets today.  I am spending all of my energy on loving my family and accepting that life is out of my control. 

5 comments:

:o) mg said...

Wow. You are awake and alive and on a spiritual journey AND you are paying attention quite beautifully. Thank you for sharing and witnessing this.
Though I have never walked in your shoes, I can imagine wanting to own the control button on all fronts concerning a child with special needs. God gives us gentle reminders that say, "Nope, you aren't in charge here, but you can cling to me if you are scared."
I love that.
Thanks again for this beautiful honesty.
Gentle yeast-free hugs for Miles.

Anonymous said...

Surprise, surprise, even those logical thinking beings amongst us find it hard to get their head around it 'not being their fault'. I blamed myself for years in one way and another, I guess I still do to some degree.

It's my birthday on Sunday and my son would have been 19 on the same day, so I'll probably have one of those 'I let him down, well my body did anyway' moments at the weekend. So I'm glad that you've found some escape from that and can now look forward to those happy years ahead with your beautiful little boy.

I wasn't lucky enough to have my son for too long, but thanks to continual advances in medicine the success rates for surgery on our kids are getting better all the time and I'm so glad that Miles and other little ones are making a great recovery and will go on to live a happy and fulfilled life.

I hope you can all grab hold of it with two hands and ride the fabulous rollercoaster of life that having Miles as part of your family will bring. Good Luck!

Lanaux said...

Anna, your honesty and ability to examine and be fully conscious - and to report it so brilliantly - truly take my breath away. I have been hoping that you would be able to turn the vast resources of tolerance and understanding you direct towards the REST towards yourself as well...because in a way, it's deep in your nature, that generosity, and YOU need it now, most of all. You are an inspiration to me - and isn't it interesting that through embracing our flawed-ness we become more fully human, more fully humane? That's grace.

Anonymous said...

Anna,
You continue to amaze us with your openness in transporting us on this sad, heartbreaking, happy, hopeful and finally accepting and rejoycing journey with you. What a joy to be able to take Miles home...HOME...to his own bed, his own house, his own...

Isn't it annoying at times that others can see so clearly how little we can control certain aspects of life...while we, in our infinite "what if's", can only see that we WISH we could control it all. However, I'm sure it's best that we can not do so. If we could control everything we would miss the unexpected joys, sorrows and blessings that God has intended for us. Of course, that doesn't mean that in the dark of night, when the house is quiet and all we hear is the gentle breathing of those we love, that we won't revisit that lonely and cheerless "What if"ville that sparks the guilts again. But, knowing that we can hit the accelerator and speed through that dangerous intersection and take the road that leads to acceptance and peace is something to be thankful for.

You and Jesse are amazing people. And Miles...well, he is the miracle that makes it all worthwhile.

Love...ab

Cynthia said...

The serenity prayer really rings true.

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.


Do something about what you can, the rest let go. It has taken me a long time to learn this one. It is hard to let go of the things we can't do anything about.
Glad you have made this breakthrough, and wish you peace as you continue on this journey.